Posted 10/25/16 (Tue)
This is the first of three parts.
By Cecile Wehrman
“Epidermolysis bullosa,” the girl says.
“Say it fast,” her brother commands, and she does -- over and over again.
“Epidermolysis bullosa, epidermolysis bullosa, epidermolysis bullosa, epidermolysis bullosa!” she chants, but it’s no child’s game.
Elizabeth White, 10, is afflicted with the disease, epidermolysis bullosa -- EB for short.
The name of the disease is as hard for most people to say as living with it, but for Elizabeth it is as normal as the sores that cover the majority of her body, the daily bandage changes her weeping flesh requires, and the frequent baths she must take to prevent infection.